Tuesday, 11 August 2015

Charlotte's Story - Facing Up to the Challenge of Adult Disability Benefit

Personal Independence Payment (PIP) is the new adult
disability benefit, replacing Disability Living Allowance (DLA) for people aged
16 to 64 with disabilities or long-term health conditions.

Change can be a good thing but there’s always a risk of it
going wrong – sometimes very wrong.

It’s a case of the latter that has motivated our Policy Manager Nick Medhurst to write this blog post.

I’ll lay out my stall: I think PIP will work for some people
with cystic fibrosis. It’s made up of two parts – one part provides financial
support to help you with daily activities, and the other provides financial
support with ‘mobility’ issues. So, in a sense, that is two potential support
packages for ‘doing stuff’ and ‘getting around’.

I believe that if the letter of the law is applied, the
majority of people with cystic fibrosis will get the support they deserve to
help them with their daily activities.

I also believe that despite the myriad challenges that
people with cystic fibrosis face in getting around – from breathlessness,
fatigue, coughing fits and pain, to fear of infection and anxiety – that many
people who desperately need that support won’t have any chance to get the
support they deserve, because of another pathetic piece of miserly, ill-judged
policy making.

So, theoretically, if you don’t need support to get around
but some financial help to overcome daily barriers to leading a normal life
will go a long way, then PIP will work for you.

However, theory is only theory. Many months ago, I was contacted
by a mother in distress. Her daughter, Charlotte, was unwell and struggling.
She was turning 16 and was told she must apply for PIP, as she was no longer
eligible for children’s DLA or adult DLA given the change to PIP.

This dedicated, caring, loving mother was caught up in a
bureaucratic nightmare of bad information, blind-alleys and complex processes.
She and her daughter embarked on the PIP application without any support or
quality advice and information. The government’s top-down, blunderbuss approach
and insistence on farming out stages of the process to private companies meant
that Charlotte and her mother had a million and one different points of contact
but nobody could give them straight answers and they continued to forge ahead
in the dark, as part of an experimental system.

Charlotte’s mother rang me. I did what I could to explain
the theory of how the system should work and to help her make sense of the
jumble of loose ends that was, laughably, referred to as an application
‘pathway’. We discussed options, plans-of-action, tips and strategies.

But I couldn’t help Charlotte how I would have wanted to. In
the end, the system failed her. And then kicked her whilst she was down.

Charlotte, unwell and upset, was made to beg for the meagre
support she had been denied – for both parts of the benefit – in front of a
judge, at a tribunal.

She was denied again.

The complexities and bureaucracy of the system they entered
is enough to numb the mind and becalm the drive and ambition of even the most
resourceful. To subject Charlotte and her mother to such miserable and
intimidating treatment, at such a difficult time, is heartless enough to be
labelled cruel. What on earth did the endless stream of nameless officials
think they were achieving?

It is my view that the individuals involved should feel
ashamed as professionals and annoyed as taxpayers. What an utter waste of
everyone’s time, money and energies.

Not everyone with cystic fibrosis will need welfare support
but the reality is that most do and for the vast majority it genuinely is a
lifeline, in the sense that it breaks down some of those financial and
logistical barriers and facilitates people going out and living their lives and
achieving their ambitions.

The Cystic Fibrosis Trust is utterly committed to ensuring
that people with cystic fibrosis get the support they deserve on time, at the
right time, first time. That should appeal to everyone, from the government, to
the families and individuals that we exist for.

We are working directly with an equally committed group of
specialist cystic fibrosis social workers from across the UK to help shape and
design our work and ensure that our advice and action is as impactful and
effective as possible.

Our Support Services team provide a helpline to share advice and
information on a wide-range of welfare topics and handle many other issues and
questions besides.

Our Policy and Public Affairs teams work to understand these
challenges thoroughly and ensure that those who can make a difference, like
politicians, know what a positive change is.

Our Media team will continue to speak out on behalf of
everyone with cystic fibrosis to help everyone understand this complex and
cruel condition.

Charlotte is heading to university this September. She will
be realising a life-long ambition and embracing one of life’s best
opportunities – to learn and excel and better herself.

What an abject shame that the government has missed the
opportunity to support Charlotte to defy those challenges and meet the
obstacles that cystic fibrosis throws her way head on. She’ll do it on her own,
with the support of her loving family.

I wouldn’t call that the Big Society. Far from it. That’s
our community and we’ll fight to the last.

3 comments:

What have politicians forgotten? The people who serve their country every day! Politics takes their living (life) away, forgetting what The Magna Carta stays to declare: 'All human beings' are endowed by their Creator with inherent and inalienable rights: that among these are life, liberty and the pursuit of happiness...

Modern America and Magna Carta - The British Libraryhttps://www.bl.uk/magna-carta/articles/modern-america-and-magna-carta